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        Cluster Headache Help and Support >> Cluster Headache Specific >> ?? chronic sufferers ??
        
(Message started by: lorac on Oct 28^th, 2007, 7:40am)

Title: ?? chronic sufferers ??
Post by lorac on Oct 28^th, 2007, 7:40am

Hi everyone :) I would like to know...... with you chronic people...were you episodic first,?

And for how long.. Do we all become chronic sooner or later, or am I just worrying too much?

Gosh I feel so bad for you all.. Wish I could help ya.

lorac

Title: Re: ?? chronic sufferers ??
Post by aloneuk on Oct 28^th, 2007, 7:57am

Being chronic really isn't the end of the world !

Its really not much fun, But you just do the best you can.

I was episodic for 5years then when the cycle came around on the 6th year it just never stopped :-/

I don't think everyone becomes chronic, and there are people here that have gone from chronic to episodic !

Don't worry too much ....

ike

Title: Re: ?? chronic sufferers ??
Post by lorac on Oct 28^th, 2007, 8:11am

Thanks ike....

I guess its just because, before I found y'all, I never knew there were chronic sufferers...now I feel so lucky, but am always waiting for the other shoe to drop.. ::)

this year is so different from the last episode....I guess you just never know what your going to get..

What was that thing that Forrest Gump said?

Oh yeah the chocolates.... :D :) :) ;) lorac

Title: Re: ?? chronic sufferers ??
Post by gore2424 on Oct 28^th, 2007, 9:38am

chronic since Nov 1999 before that spring and fall for 17 years Terry

Title: Re: ?? chronic sufferers ??
Post by Bob_Johnson on Oct 28^th, 2007, 9:52am

J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.

Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. It is remarkable that little is known about risk factors that make CH chronic.

Publication Types:
Review

PMID: 16362185 [PubMed]

Title: Re: ?? chronic sufferers ??
Post by Sean_C on Oct 28^th, 2007, 10:07am

I was chronic for the first 10 years, had a mysterious 3 year break, then became episodic for the last 14.

Sean.......................................

Title: Re: ?? chronic sufferers ??
Post by Brewcrew on Oct 28^th, 2007, 10:16am

Episodic for the first 12 years, then two 18-month chronic periods in a row (with a 9-month break in between). Now, after a 14-month break, I just started cycle again about 3 weeks ago so it's too soon to say where this one is headed.

Title: Re: ?? chronic sufferers ??
Post by Jill on Oct 28^th, 2007, 10:26am

Hi Lorac...

My clusters started about five years ago, came one day and they have never left. So I started chronic and chronic I remain...

I would not worry so much about being chronic, cross that road when and if you ever get there and enjoy every moment that you have pain free. Hopefully that time will never come for you though.

Jill

Title: Re: ?? chronic sufferers ??
Post by Brewcrew on Oct 28^th, 2007, 10:32am

I've heard some chronics state that being chronic is actually a bit easier in that it is more predictable.

I don't know. It all sux if you ask me.

Title: Re: ?? chronic sufferers ??
Post by sldrswyfe on Oct 28^th, 2007, 11:48am

Chronic since first hit....and the chronic/episodic debate...I wont' even get into.

Neither is a good deal...but it is definately different.

Title: Re: ?? chronic sufferers ??
Post by Jill on Oct 28^th, 2007, 11:51am

on 10/28/07 at 10:32:43, Brewcrew wrote:

I've heard some chronics state that being chronic is actually a bit easier in that it is more predictable.

I don't know. It all sux if you ask me.

Brew...

You are right, CH does suck. I want to say that before I write the other part of this message. No one should have to have it, in any form.

However, I am not sure that I would say that chronic is better and more predictable. I get hit all of the time and they never seem to follow a pattern - they come at all hours and no matter what I am doing.

Also, my life has been altered from chronic clusters. I am not able to work right now or go to school and to even make plans is very hard. I know other chronics who are in the same situation - med resistant and life on hold in so many words.

I don't think that either form of clusters is easier than the other - we all have the pain and we all have to live with this.

I just wanted to add this because I think that it is important. Like Sherry, I don't want to start a debate because she right - both situations are different. Just felt that I had to add this point.

Jill

Title: Re: ?? chronic sufferers ??
Post by E-Double on Oct 28^th, 2007, 12:44pm

I will validate what Bill stated.....
When I approached the 1 yr mark suddenly my attitude became a lot better and I dealt with things a lot better as a whole.
Now as I near the 4 year mark I don't even think about it with exception to the past couple of months....
I went into the hospital and though the chronic cycle by diagnostic criteria has not broken I have had very few major attacks but now I am left with that little bit of anxiety that I had a few years ago of when is it going to come.
With exception to a few years ago I have never let it interfere with my job and although it is really tough at times I can honestly say that i do my best.
At times it has interfered with my family life but I try really hard not to allow that either.

To answer the original poster's question...

I was episodic for the first 10+years and chronic for 3.5

PF wishes and don't sweat the samll stuff.

It's a freakin label....your attitude should be positive regardless.

E

Title: Re: ?? chronic sufferers ??
Post by aloneuk on Oct 28^th, 2007, 12:56pm

on 10/28/07 at 12:44:27, E-Double wrote:

It's a freakin label....your attitude should be positive regardless.

very well put e-dub,
the pain is the same episodic or chronic !

Title: Re: ?? chronic sufferers ??
Post by Ray on Oct 28^th, 2007, 2:24pm

I've been chronic since the first CH, over 20 years ago. But there do seem to be cycles of "worse" and "less worse".

Mine always have been somewhat unpredictable. I could have 8 hits one day and skip a few days. Who'd of thought?

Ray

Title: Re: ?? chronic sufferers ??
Post by phil_h on Oct 28^th, 2007, 6:37pm

I've been chronic from the start. I think the only thing predicable about my headaches is ; whenever I think I've figured out the daily pattern----- the BEAST changes the rules.... phil h

Title: Re: ?? chronic sufferers ??
Post by kyitb on Oct 28^th, 2007, 8:07pm

I've been technically chronic the whole time. I'm probably wrong but, i think they define as no breaks for 3 weeks. I used to get them 2x a month or so. For the last 4 years they've grown steadily till today (tomorrow i'm gonna stop getting up, I can feel it ;) ) Which is about 3-5 times a day it goes more than 5 sometimes but we don't talk about those days ;) ... So yeah four years always chronic.

Title: Re: ?? chronic sufferers ??
Post by BarbaraD on Oct 29^th, 2007, 6:31am

I started out episodic and then in 97 they just took a seat and stayed. I go thru high cycles and low cycles, but live with them and lead a "fairly" normal life.

They're unpredictible on the best days and I don't make any really long range plans, but am active and don't let them win. I'm really stubborn that way.

Hugs BD

Title: Re: ?? chronic sufferers ??
Post by midwestbeth on Oct 29^th, 2007, 3:46pm

ch showed up in March of 06 and haven't left yet.

phil_h....What you said is so true. Just when you think you have the ch schedule figured out (and plan your life around it) it up and changes.

Beth

Title: Re: ?? chronic sufferers ??
Post by nani on Oct 31^st, 2007, 12:42am

Episodic from 1973 until 2000. Chronic from 2000 until 2005, when I started using the Clusterbuster treatments. I had a 34 day remission before I got hit again. I'm technically chronic again, but my CH is much more controlled. I have rare breakthrough attacks, and most of those are quite short (10 minutes), I get shadows a few times a week, and I will rarely (but they still happen) get hit long and hard.

Title: Re: ?? chronic sufferers ??
Post by Barry_T_Coles on Oct 31^st, 2007, 11:58pm

I started out with one bout & went PF for 5 years, then on the 6^th year they came back & stayed although I have my up & down days I also get some pretty long breaks between my high cycles.
My best run since going chronic was 244 days, then 50 days of getting hit & now 84 days PF so far this time around.

I’ve got an XL spreadsheet that calculates the days while in cycle & when out & saves counting on your fingers; if anyone wants a copy PM me & ill pass it on.

Yesterday is History. Tomorrow is Mystery. Today is a Gift... Use it !!!! And always remember....when life hands you Lemons, ask for tequila and salt and call me over ;)

Cheers
Barry

Title: Re: ?? chronic sufferers ??
Post by lashultz on Nov 1^st, 2007, 1:43am

For the first six years or so eposodic. The last seven chronic. I am still working on the clusterbuster treatment with positive results.

Title: Re: ?? chronic sufferers ??
Post by clavers on Nov 1^st, 2007, 12:24pm

eposidic for 15 yeaers then chronic for 8. It's wearing me down.

Title: Re: ?? chronic sufferers ??
Post by Katherinecm on Nov 10^th, 2007, 1:37pm

I started out as episodic. I went chronic when despite my intuition I took a doctor's advice and kept upping the dose of the verapamil that wasn't working for me.

I wouldn't worry about becoming chronic. It takes a while and you go through the stages of grief about it, but eventually you do adjust.

For me it is definitely not easier- back when I was episodic I knew I would get hits 15 minutes after I went to sleep (usually around 10:45), at 1:15 am, and at 10am, and maybe again at 3pm. That was something I could work through and build a life around. When I went chronic I lost the ability to predict when the hits would come, and they came more often, which I guess is kind of par for the course. I've lost my ability to work or go to school. I have adjusted to the pain a bit faster than I might have otherwise though.

My point is, just be grateful for the good things you have in your life, and don't worry about things you can't control.

Katy

Title: Re: ?? chronic sufferers ??
Post by black on Nov 16^th, 2007, 8:51am

started at 1994 and keep going.chronic since that year.but from the day i ve been in this board my hopes for becoming episodic someday have raised up.

Title: Re: ?? chronic sufferers ??
Post by swimchica623 on Nov 16^th, 2007, 1:27pm

I've been diagnosed as chronic from the beginning, but this only started last June so it has only been about a year and a half, but still....a year and a half with no break. Low and high cycles....low cycle times are great and easy to live life because it will be some shadows and night time or evening hits so I'm around o2....high cycles are pretty life distrupting though. Working at getting rid of those and I'll be a happy camper. :)

Lisa